A Prayer for a Life of Thanksgiving

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“How good it is to give thanks to the Eternal and to praise Your name with song, O Most High;  To speak of Your unfailing love in the morning and rehearse Your faithfulness as night begins to fall.” Psalm 91:1-2

Lord,

I adore You, how I love You. Cherishing who you are I offer worship from the depths of my soul to You. I treasure Your living  Word. Your beauty surpasses all words. Magnificent creator. Author of Salvation, through Your sacrifice beyond human comprehension You have brought me by Your blood, calling me Your beloved child. In You I  have everlasting life. You constantly poured out countless gifts beyond what I deserve, furthermore, far beyond what I deserve. All honor, glory, power, and praise belong to You now and forever more. Blessed be Your glorious name.

The to-do list dictates my time. My emotions wildly running dictate my reactions. My pain dictates my thoughts. I hurry- thought scattered- overwhelmed-depleted. Senselessly rushing another day without ever savoring a moment. Neglecting the gifts you have bestowed on me; I take so much for granted. I do not understand the depths of each gift and many I cannot see. Lord Jesus, have mercy. Forgive my ungrateful heart and lavish on me Your stunning grace.

Thank you from the depths of my soul for providing for me. I praise You for my relationship with You, Your Word, and Your character. Thank You for creatively and compassionately knitting me together and for the purpose You formed me for.  I praise You for this season of life. Thank you for investing in me, loving me, and forgiving me. I praise You for the blessings I neglect to see, those I am unable to understand, and the ones I have acknowledged, though not enough.

Enable me to slow down… to pause and reflect on Your goodness. Help me to recognize and say thank you for a few gifts. Fill me with thanksgiving every moment of every day. Let me live by Jesus’ example offering a gift of thanksgiving to You in the midst of unspeakable pain. Allow my thanksgiving to bring glory to Your holy name.

Amen

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Live Loved: Advent

 This is our fourth week of advent, which focuses on God’s love for us. In addition, our love for Christ and for others. God desires nothing more than your love.  He cherishes who you are today with all your imperfections. “The Eternal your God is standing right here among you, and He is the champion who will rescue you. He will joyfully celebrate over you; He will rest in His love for you; He will joyfully sing because of you like a new husband.” Zephaniah 3:17. God invites you in to have a deep personal relationship with Him. To live loved every day from here on out. God’s love for you surpasses human understanding it is that complex and beautiful.

The Christmas story is laced with love. Christmas points us to the cross where Jesus displayed His amazing love for us. Jesus lived loved in His ministry. God’s love is evident through Scriptures, creation, and our personal lives. “ This is the embodiment of true love: not that we have loved God first, but that He loved us and sent His unique Son on a special mission to become an atoning sacrifice for our sins” 1 John 4:10.

An element of living loved, is giving love. Christ enables us to love others. You can give love from where you are today. You don’t need to be wealthy or healthy. You only need a willing heart to serve the Lord and to give love to others. He will surely direct your steps. He will deeply bless your words. A hug, words of encouragement, or praying with someone goes a long way.

Additionally, living loved is praise God with a thankful heart for the simple blessings in your life this advent. Worship Him as the shepherds did in the Christmas story with a sincere heart. Mary also praises the Lord for His favor, “My soul lifts up the Lord! My spirit celebrates God, my Liberator! For the Mighty One has done great things for me; holy is God’s name!” Luke: 1:46, 47, and 49.

As Christmas draws near find someone to give love to; someone to encourage. Practice living loved this week. You are a child of the one true King. Reflect on His amazing love, which is evident in your life. Remember times this year that you felt His love and praise His holy name. Consider how you can live loved this advent season as well as in the new year.

God,

We praise you for the gift of Your Son consumed with Your love. For His example of love. Thank you for loving us. Allow us to live loved no matter what events play out in our daily lives. Enable us to give love to others. Let us be a blessing to them. May our hearts forever sing Your praises. Bless these days leading up to Christmas. We love you, Lord.

Amen

Wounds

Wounds cut so deep

Pierced skin

Pain endured for all His sheep

Washed away all their sin

 

Wounds that blood poured from

The cup that couldn’t be taken away

Beating till he went numb

Knew he had to stay

 

Wounds of unknown pan

Took a sinless man’s life

The Father cried through rain

Finally struck with a knife

 

Wounds that heal

Wounds that gave

Wounds that took my sin away

Wounds of love

 

Valentines Day

Happy

Originally, I had no intentions of blogging today, but God nudged my heart. The concept of Valentines day has always been appealing to me. I love all things girly like hearts. The more I ponder this day, the more I realize it should not simply be about candy, flowers, and couples. It shouldn’t be a day dreaded by us, single people.  It should be a day to reflect on all the people we love in our lives- not just our significant other. Valentines day is more than a romantic movie or other things the media might say. Not that any of these things are bad but the meaning gets lost in the shuffle. It is a day to be grateful for the people who deeply love you, encourage you and support you.

It is fitting that Valentines day is during lent this year. This day our hearts should also be focused on God’s indescribable love for us. A chance to deepen our relationship with Christ. You are Gods favorite; his pride and joy. He delights in you. He longs for you to find all you need in him, to rejoice in his love, and be content in him. Before He crafted the universe he already knew how every moment in your life would unfold. His love for you remains the same. Nothing can sperate you from it. He will continue to bless you greatly. “Jesus turns lives into legacies. He is transforming history through you.”

Valentines day is also a reminder to be nice to ourselves. To try to love and accept who we are and where we are in our journey. You are valued beyond words. Perfectly flawed, just human. You are worthy of love, all things good, and worthy of blessings. I wish you would see yourself through others eyes, maybe then you could see your radiant beauty understanding your worth.

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How are you celebrating Valentine’s day?

The Heart of Worship

Worship is essential to our spiritual well-being. We were created to love and worship God. However, God does not need  you to worship him. He desires to be in close fellowship with you. He craves, for you to understand his love for you. Worship renews us providing us with joy, strength, peace, and much more.

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This song is a classic. Without knowing it many times our unfocused hearts, shove God out of the way; even during worship. We idolize other things or become prideful.  Our sin coved hearts begin to harden as we take steps backwards, away from the throne. How many time have we speculated how those around us are worshipping. In our minds saying, “She is showing off, that is not real worship.” Also allowing our minds to paint a captivating daydream. Consumed with our schedule, we fidget entertaining anxious thoughts.  Or we are more focused on the talent of musical ability than on the Sovereigness of God.  Music is a magnificent way to worship, but it is not the heart of worship, not the main focus.  Ironically, I am using songs to get me point across. The lyrics demonstrate truth,

“I’m coming back to the heart of worship
And it’s all about you
It’s all about you, Jesus
I’m sorry Lord for the things I’ve made it”

“The heart of worship is our heart, delighting in Jesus and expressing praise to him for the true things the Scriptures teach us about who he is and what he has accomplished for us.” God does not want us to participate in a drama production; he simply wants us to come as we are to authentically worship him. He knows our hearts. He knows every flaw and failure; every negative thing in our character and in our life. Despite this, he commands us to come as we are, as he lovingly extends his grace to us.

The majestic name of, the Lord is worthy of all honor. He lovingly crafted every corner of creation with passion. His fingerprints are evident throughout nature. “God’s glory is everywhere from the smallest microscopic form of life to the vast Milky Way, from sunset and stars to the storms and seasons.” Before God crafted the universe he construed a purpose for your life. Our righteous Lord is the source of life. Allow your heart to align with his will and worship his name.

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It is good to passionate pursue things, striving to succeed as hard work pours out. However, none of these things should become a god in our life.  In the spoonie world chasing after the Spoonie dream is easy. The dream of a perfect treatment plan, pain-free living, healing, or aspects of a healthy person’s life such as a social life. “To treasure God more than pain-free living.”  Do you treasure God more than anything in your life?

I love the words to this song though it the Spirt has showed me a lot.

“We must not worship something that’s not even worth it
Clear the stage, make some space for the one who deserves it
Anything I put before my God is an idol
Anything I want with all my heart is an idol
Anything I can’t stop thinking of is an idol
Anything that I give all my love is an idol

And we can sing all we want to
We can sing all we want to
And still get it wrong
Worship is more than a song”

If we are not intentional about riding our hearts from idols we, fall into the trap of worshiping them without even noticing it. The enemy longs to disconnect us from our creator. Keeping us away from worship is included in his laundry list of ways to diminish our faith. He attempts to keep us too busy to spend time with God, “the primary purpose of Sabbath margins- of saying no when appropriate- is to diminish our devotion to all other suitors and crystallize our allegiance to God.” Spending a substantial amount of time with God on a regular basis is not only a command the Lord gave us, but it is also essential to life. Time in worship allows us to be renewed in a unique way. Enter boldly into the Lords presence’s and worship him fully.

My Invisible Fight

If you know me, you know I am chronically ill. My illness does not define who I am but it is a part of me. I look at as a trait not necessarily positive or negative. Like having brow hair, an oval face, or having dimples. My invisible fight. Words that empower. Words that inspire. Words that sum up my life over the past few years.

Without a doubt I have become a fighter, in this invisible fight. Few people know the details of my fight. Chronic illness is much more than what is seen on the surface. The battle is within. Falling apart only behind closed doors.

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I had many encounters with terrible doctors. No one took me seriously (I still struggle with this today). Doctors downplayed any concerns. My mom was my advocate, my voice. Growing up I was dangerously shy. If someone were to look at me crossed I would shrink back into my shell. Hearing my middle name released a waterfall of tears. Speaking up, was terrifying for me. Gradually I began to find my voice and become my own advocate. I have educated myself on treatment options, my illnesses, and everything medical that is relevant. I have learned that I know my body and my illnesses better than any doctor. After all I am the one who lives with it every moment of every day.  I fought to find my voice. My mom and I fought to find good doctors.

My health began to spin out of control in high school. It became evident that something was really wrong. Little by little new symptoms would develop. A new rash, unbearable pain, sun sensitivity, collapsing, weight loss, hair loss, and that was only the beginning. Medical testing became the norm of my life. Blood work that included more than thirty tubes of blood, MRIs, x-rays, GI studies, CATSCANS, scopes, EKGs, EEGS, and other medical tests that I cannot recall the names to. In addition, I had five operations in high school. The operations ranged from removing my tonsils to removing cysts to explority surgery.I thought I had hit rock bottom my junior year of high school, after an encounter with a medication that caused seizures. Little did I know rock bottom was much further down. Little did I know that I would long to go back to those high school years and deal with that pain and those symptoms.

I felt like the pause button has been hit one too many times. I have been home bound many times over the past six or so years. Every time play was hit and I began to recover, get stronger, and move forward pause would be hit yet again. It seems like each time my life is put on pause gets longer and finding the play button becomes more difficult. 

My invisible fight was taken to a new level in college first due to pluricy. Then to finding bloody urine that indicated a sever double kidney infection lasting four months. I was taken off my Lupus medication which gave Lupus permission to recklessly attack. I began seeing doctors every few days, had medical testing weekly, and became a regular at urgent care. I landed myself in the cardic unit last September. I continued to get worse. More testing. More doctors. More pain. Hopeless.

My symptoms shifted. My abdomen began to give me issues again. This time it was worse. Abdominal swelling to the point of looking at least six months pregnant was my newest symptom.  I began to question how much more my body could take. How many more days of intense pain that sent me to bed screaming and doubling over. I was taped. Giving in to the fight was tempting. No one had answers. No one knew what to do.

Things were terrible. Eating was difficult and staying hydrated was nearly impossible. The fatigue was thick yet my body wouldn’t surrender to sleep. I had to rest going up or down the stairs. Breathing was a chore. Shower a hazard. Daily tasks seemed like huge projects. Some days I couldn’t bend down to put on my own socks.

Finally it happened. This past April, I hit rock bottom. I could barely move. The pain and fatigue were more intense than I can describe. I was admitted to the hospital for ten days. https://chronicallyhopeful2014.wordpress.com/2015/05/02/hospitalization/

Looking back I believe that being admitted was the best thing for my health overall. I was at rock bottom. It was more difficult to keep moving forward than I can describe.

When I received the message on Chronically Hopeful inviting me to help and participate in Invisible Illness Awareness week I was shocked and over joyed. I firmly believe that sharing our invisible fight stories is vital. Someone had shared the fight song. I immediately connected with it and shortly after fell in love with the lyrics. I feel like that is where I am in my invisible fight, taking back my life. Taking back life after dramatic pauses is difficult. At times it is painfully slow. Progress seems invisible.  Taking back my life and continuing to fight is a daily decision and struggle. I am mastering a new balance act with my invisible fight and the rest of my life.

My invisible fight has probably been the most difficult fight of my life. I know it will continue to be a tough fight. It has caused me physical pain, heartbreak, taken me on an emotional roller coaster, played tug a war with my faith, caused me to lose friends, and lose much more. Yes, there are countless negative attributions of my invisible fight, but I am sincerely and deeply grateful to be in this fight. First of all I am grateful because I believe that God will use my invisible fight for his glory. Through my invisible fight I have matured as a person and as a Christian. I have learned so much. I have meet some of the most inspiring people. I have had the honor of running Chronically Hopeful and helping with the Invisible Illness Awareness Campaign. My prayer is that my invisible fight will be a testomy, inspiration, and blessing to others.

A Reason Why

Maybe there is a reason

For all the storms in life

For all the tears we cry

Maybe there is a reason

For every season

Why flowers bloom

Leaves glide

Snow blankets the Earth

And the sun warms our hearts

Maybe there is a reason

I’m alive

Maybe I have a purpose

Maybe I could change a life

Have you ever thought maybe just maybe

There’s a reason why the sun rises and sets

Why people go through hard times

Why you’re alive

Maybe just maybe there is a reason why

Psalms 32:7

“For you are my hiding place; you protect me from trouble. You surround me with songs of victory.” Psalms 32:7

There are days living in the Spoonie world is difficult. Thick anxiety is layered within. Fear of those two heavy words.. what if. There have been an abundance of moments on this journey where I wanted to hide. Like a timid child hidden from the melody of an intimidating thunder-storm.

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When we were children, we didn’t just hide out of fear. Hiding provided entertainment and excitement. The anticipation of being found remains unwavering. However addition positive emotions associated with hiding have melted with age. Negative slush traps us.

Hiding provides an escape. For even a moment I would like to escape the burdens of the Spoonie world; the doctors, medication, testing, emotions… the burden of being a spoonie.

This verse reminds us of our ideal hiding place, which is the Lord. In the mists of chaos and struggles we can crawl into the Lords compassionate arms. He is our hiding place. He is the source of all we need; our everything.

The Lord knows everything; his understanding is unhindered. He spares us from countless tragedies. He gently guides us through each storm.

There is a blissful victory in Jesus. He allows each moment of our lives to work together and bring Him glory. Though I may walk through the valley of the shadow of death melting from the negativity within I know somehow the Lord will receive glory. There are many things I do not understand. But I refuse to allow the burdens of the spoonie life to hinder my faith. Despite it all I will praise the Lord. With a heart of gratitude and wonder I will thank the Lord for my struggles. For he will receive glory and victory. Blessings are woven into this season. He will transform it into a master piece. It will be used for something beautiful.

“Nothing in your life has happened by chance. You are here exactly at this moment in history with exactly the circumstance you have encountered because God has a specific task he wants you to fill.”  The Lord has an astonishing purpose for your life. He will use every negative thing for good, to encourage others. Keep faith. When you cannot take another step, rest in the sovereign arms of God.

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A Caregivers Perspective. Part Two.

Mary Jane is a selfless caregiver of her husband and daughter. She shares some of the struggles she has encountered on this journey. Daily she demonstrates what a hero looks like. I hope her story will inspire you.

Fear of getting unwell

Written By: Mary Jane

Keeping on alert all the time can be exhausting and tiring. My husband was officially diagnosed in 2010 with Systemic Lupus Erythematosus and our daughter was diagnosed in 2013

They both suffer badly and daily from this terrible disease my husband stopped working Christmas 2013 after being hospitalized due to the lupus attacking his spine this has created stress but also is easier as now I don’t worry about him driving he has since had a number of TIA‘s and neurological problems has spent 7 out of 12 months in hospital he is no longer able to drive as he forgets where he is gets very disoriented easily, also his medication does not allow him to be able to drive safely.

Our daughter was able to get an extension on finishing her schooling she has been in and out of hospital due to kidney problems also caused by the lupus but she is able to do her college degree from home when she feels she’s ready. The lupus for her has changed her but also changed her relationships with her friends, as a lot of people in their early 20s are able to do their own thing without thinking twice.

We have two other children that help out a lot but they also take on a lot more than children their age which as mum I worry about as its not normal for people their own age to be concerned about dad falling or their sister being able to get through the week without her kidneys being unable to function.

I also home school our younger two children as God lead us to do this 4 years ago and now I understand why as it actually is easier for me, that way I can stay home more and watch over my sick husband and daughter. It also makes it easier for our children as they see what happens on a daily bases and when they have to go to hospital its easier for them to keep the daily routine going they also take it in turns to look after Daddy by doing their days worth of school in his room where he is as hes unable to be out of bed a lot also if he is in hospital they take their school with them to do and it helps him to not feel left out.

As a care giver of two with Lupus it is difficult to balance the daily things that need doing but also not being to busy to not have any compassion and care.I now notice that I do get tired but I will never tire of looking after them as I married in sickness and health.

The health is the easier part the sickness is the test part I miss my husband hes my best friend but his memory is very bad now and I have to try not to be offended of feel rejected when he doesn’t remember anything that we did together or I did for him.  He gets very anxious when I’m not around or if I have just gone to the chemist and he wakes to the children here but me not which makes him very anxious.

Also as a mum I must always remember that my daughter relys on me to be mum but also to know what to do when shes unwell, or a doctors appointment, or when someone is putting pressure on her like a friend wanting something from her that’s just not possible as her friends have been able to get engaged or go out as a young person I know shes watching it all wondering whats going to happen but I also pray that she is able to trust me and know that I will always protect her.

And for our other children they are fabulous at helping but I always have to keep in close balance that they need mum. It’s a lonely road for a carer your constantly putting fire out and constantly watching for things that never had to before it puts a strain on everything.

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A Caregivers Perspective. Part One.

Being a Mom of a Chronically Ill Child

Written By: Eileen Guyadeen

Being a caregiver of one who is chronically ill comes with countless challenges. Caring for an ill child is one of the most difficult things to do. Those who are ill rely completely on their caregivers. Being a caregiver can be a lonely, overwhelming, and blessed road. This post is to honor all caregivers, especially my own, my mother Eileen Guyadeen. Without her I would not be where I am today or who I am today. I could never express enough gratitude for all she has done for me.

-Victoria

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My daughter Victoria who writes this blog for chronic ill people, ask me if I would write something for it. I will start at the beginning, Victoria was born on my birthday which is January 28, 1994. She was a healthy baby at 6 lbs 8 oz. A blessing in every way possible, especially when my own doctor told me it will be nearly impossible for me because of myself having endometriosis, and like I told the doctor he is not God, and I truly believe with God all things are possible. My pregnancy went pretty well, listening to my doctor and doing whatever I needed to do to have a healthy child.

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Victoria was an active child by the time she was two and a half I had enrolled her in ballet classes, and she simply loved it too. She was small for her age and I kept her first ballet and taps shoes for my keepsake, because the dance teacher had a hard time finding things to fit her. She always loved playing outdoors all the time, during the summer she played in her pool, with her toys, and even loved reading outside all thru the beginning of her teenage years. In every way possible Victoria was always an active child. However over the years since she was a baby Victoria always seem to get a lot of viruses, doctor couldn’t always explain it to me why she did, always missing a lot of school. I remember by the time her ninth birthday rolled around she had a lot of stomach problems, she was out of school for three months, I finally started to record everything she ate and it was the diary that was making her so sick, so I cut it out from her diet. I spent plenty of times in the emergency room with her stomach problems never to know what was going on, and more important never an answer for what was going on.

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By the time she was in middle school when I took her to the doctor for the problem, her doctor thought she was trying to get out of going to school. I brought in her report card showing this child was an honor and high honor roll student, and loved being in school. Thru out high school my daughter’s health got worst, going thru five operations in four years. Her health got worst by the time she was a junior in high school that she was on homebound for school. By the time her senior year was about to start the principal of her high school share with us if Victoria miss more than ten days of school she would not be able to walk at her graduation. So with that statement Victoria ask me if she could Cyber School her senior year, and I agree that she could. She finished her senior year with 3.7 GPA, the night of her graduation it was very painful for her to walk at the ceremony, and I cried with her and said I know however you did it with honors in spite of your pain.

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Since Victoria graduated from high school things for her with her health has gotten worst. Doctors never can make up their minds for a treatment plan for her, it makes a person’s head spin. I have been ask so many times, how I do this with my daughter’s health. My answer to the question is my faith in the Lord Jesus Christ. With everyone appointment rather a doctor appointment, a trip to urgent care, test, or even the emergency room, and hospital stay, I carry along with me my Bible, why because I begin to search the scriptures for God’s promises. In the book of Jeremiah 29:11 it says For I know the plans I have for you declares the Lord, plans to prosper you, not to harm you, plans to give you hope and a future.  Victoria is a gift from God and I do believe that he loves her even more than her dad and I could ever love her.  Every time my daughter cries in pain, I say to her that God didn’t give us a spirit of fear, and I can do all things thru Christ who gives me strength (Philippians 4:13) we have cried together, as well as something more important which is to pray together. For God to give her the strength going thru this, as well as wisdom for her doctors, to see what He sees inside of her, because Jesus is the great physician. It is never easy, right before my daughter went off to college I had a meltdown. Yelling at God what did my daughter ever do to deserve this horrible disease, and then finally after I stop being angry at God, I heard a voice in my heart then why my son (Jesus Christ) in your place on the cross, I never ask that question again. I am always asking God for the strength thru all of this, we travel two hours each way to her doctors, and yes there has been many times I am total drain with running back and forth. I also have two other children to care for, which at times I feel as thro I have short change them thru this. I try to remember different things to get me thru, Stop, Drop, Kneel, and Pray, I have relied on God to get us thru this with my daughter. Jesus never promises anyone that once we accepted him as our own personnel savior, that our lives would be easy, he promises , surely I am with you always to the end of time (Matthew 28:20) I have seen my own personnel walk with Christ change for the better. I wanted to show Victoria, as well as my other two children, that life can become very hard for us at times, and thru those difficult time we need to run to the Lord, not away from him. Lean on Jesus and give him our burdens. In the gospel of Matthew 11:28 Jesus says these words Come to me, all you who are heavy burdened, and I will give your rest, Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden light. If anyone ever read the poems Footprints in the Sand, as you read these words it says, Lord you say that once I started to follow you, you would never leave me, so I don’t understand why was it at the difficult times I saw once one set of footprints, and the other times there were two. He replied my precious child during those hard times, it was then that I carried you. So I can picture during these hard times Jesus is carrying my daughter. Victoria is in the process of finishing her second year of college, in which she has been doing on line for a while. In thru all of her pain, doctors, test etc. Victoria has manage to be on the Dean’s list at Sussex County Community College, with a 4.0 GPA, as well as being inducted into the international honor society this past March. In the fall she will finish her BA degree at Centenary College which is not far from us, and then hopefully on to Drew University for her Master degree. Thru all of the medical problems that my daughter has gone thru so far, I have totally relied on my church family for prayer, as well as other family or friends, because pray to me is an essential tool we need to have with our daily walk with Christ. For me thru all of this I continue to walk with my Lord, with prayer, studying the scriptures and being involved in my church and just serving him. I continue to thank God for choosing me to be Victoria’s mom, I have been the one who has been bless. Yes it has been difficult with her disease, you see she has lupus which is an autoimmune disease, however it doesn’t define who she is and that is she is the daughter of the most high king Jesus Christ.

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